*Sigh* Just got the grand update from the new GI doc. I finally had the c-scope two weeks ago and the follow-up appointment today. Turns out that all the GI pain and other "bathroom" issues are being caused by "tons of diverticulosis" (her words) and most probably Chrohns. She did several biopsies and it is almost certain. I'm not sure how this kind of thing can be "almost" . . . but she said the each will aggravate the other and make confusing pain. She wants to start me on Endocort and/or Asocol (sp??). I needed a few hours to take all this in and am just now starting to look up some info for both issues. *sigh* But . . . I have still been able to be more active than a while back . . . so still feel blessed. I'm hoping that with this new dx comes less frequent GI attacks and all that comes with it. Sorry I haven't been around much . . . I'm really trying to do less thinking about all this medical stuff . . . but . . . now a new rabbit trail to chase down. I made myself a nice pot of tea and will be checking out the info on the Chron's forum here. On a good note . . . we've had some spring-like weather and the daffodils are blooming . . . YEAH!! Blessings! In His Grip
AlwaysRosie " We can't control the waves, but we can learn how to surf!! "
Psalms 139
Co-Moderator - Lupus Forum
UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator Post Edited (AlwaysRosie) : 4/15/2008 1:48:25 PM (GMT-6)

Oh Rosie, I am so sorry to hear this (((( hugs ))))). All of this can be so overwhelming sometimes, can't it? It just seems like one thing after another.

I pray the new med will help, I don't know much about them but I'm sure the folks on the Crohn's board do. I've had to visit that board too because my GI issues (from lupus) are very similar to Crohn's. Imuran works great for me.

Our weather was great last week but this weekend it turned cold again. My Azalea's are starting to bloom, you should see the ones we saw in FL, they were so beautiful!!

Rosie I used Entocort for quite some time and it worked very well. I tried asacol and it was a no go . Colozal is the drug of choice but to be honest I cant get off steriods and I think that is my lucky charm as far as GI goes.

xoxoxox I really! wish you the best. It sucks to have GI disease whatever it is

Rosie, how awful for you. I'm so sorry you have additional medical problems to deal with. I just hope and pray that the new med will do the trick and that you'll stop having stomach problems. I've heard that diverticulitis is horribly painful. The blessing is that they found the problem.

I'm drinking a nice cup of hot tea as I write this, so am sending you a cup too. My azaleas are beginning to bloom, the japanese maples are a brighter red than usual and all the different spring colors make the yard look so great. Spring is so uplifting.

I've been away from the forum for quite a while too, for the same reason you state. As I start to feel better I want to forget that I have health problems and coming here reminds me that I do. But I miss the contact I've had with you and my other close friends here. So a great big ((((((((hug))))))) to you and to all of you other good friends here.

Hang in there, do your research, take your meds, and life will go on. I hope you feel much better Rosie.

Thanks Stacie, Chaya, Hippi, Babs and Ginny!! You've all taught me well how to deal with more wonderful news. *sigh* I went to the eye doc today to do the visual field for the plaquenel and he did a Schirmer's test which resulted in a dx of dry eyes and Sjogrens. I guess I knew it . . . but had never had it spoken out loud. I went to get the last of my blood work and stopped for a great big, chocolate covered, cream filled DONUT on the way home. Mmmmmmmmmm it was so good. Then I took a nice nap. As with all the wonderful news we receive . . . nothing has changed . . . just have a couple more labels to add to my signature. At this point, I was glad to have a place to share my news, as I don't feel inclined to share this with more than closest family. Thanks for always giving me a supportive place to turn with my "junk". Love you all!! Thanks for the tea . . . it is SO nice and not and yummy!! Blessings! In His Grip
AlwaysRosie " We can't control the waves, but we can learn how to surf!! "
Psalms 139
Co-Moderator - Lupus Forum
UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator

Rosie,I am so sorry you have to go thru this. I am however shocked you can eat donuts and drink tea with crohns and diverticulitis. Kudos! I would wonder if the diverticuliti are fistula's? about the eye's, crohns can cause inflammation of the eyes.Anyway I hope you get to feeling better!NavyCrohn's Co-moderator

We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) Praise in public, chew in private.Make sure your suffering has meaning....

____________________________________

All suggestions/options/opinions are caveated with please consult with your local health care provider...

Stacie . . . send you a cyber-donut . . mmmmmmm . . . no guilt. Navy . . . I'm actually having very little symptoms right now. The big pain and associated issues come sporadically. After your caution about the donut . . . I hope I don't send myself into a flare. I've been trying to eat healthy and eliminate sugar etc. . . . but the comfort food was calling my name yesterday as I wrestled with these new dx's. I find it very helpful to do the "best case" "worst case" scenarios and then move on to do best self-care and enjoy each good day. Your encouragement is appreciated and I'm sure I'll be pestering you and the other crohnies before long. My tea at full enjoyment as I hold the warm cup. Lots of times, the tea remains in the cup and reheated several times just for the pure pleasure of holding the warm mug. My favorite is Lemmon Zinger, but I usually blend a couple different types. And it serves well here at the Lupus forum . . . LOL!! Tea for all!! Blessings!
In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Psalms 139
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator

Awwww........sweetie I'm so sorry to hear that you've got crohns disease. (((((hugs))))) to you I wish there was something I could do for you. I had problems with diverticulosis and ended up having that part of my colon removed that had the most diverticuli in it. I still have a couple up high and I'm hoping I won't be faced again with more colon surgery.

As for the sjogrens, I'm afraid I may have it too. I just wanted you to know that you're in my thoughts and prayers and I'm sure you're going to do well. You're a strong woman and can deal with things that get thrown at you. You've been such an inspiration to me, I just want to say stand strong you can handle this and know that I'm always here for you if you need me.

I glad you had your donut and enjoyed it. It's alright to have that comfort foods at times. I hope you won't have any ill side effects from anything you eat. We're here for you Rosie, you lean on us as much as you want.

Thanks Barb . . . I'm a really healthy woman compared to you and some of the others here. I'm just always glad its me and not one of my kids or hubby. I keep telling him that this is all harder on him than it is on me. I know I'm ok but he is so protective and worries about me. In that respect, I'm hugely blessed!! I hope you've been doing better these days. You've been through SO much the last couple years. Hot tea for all of us!! Blessings!
In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Psalms 139
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator

Bless your heart sis!! (((Hugs))) A good donut and tea sounds soothing..... . I hope they get you on the right combo of meds soon to calm all this stuff down. Keep us updated sis and take care. You are in my thoughts and prayers.

(((( Rosie )))) I can't eat a lot of raw veggies or fruit either I ate an orange last night and woke up with severe cramps this morning. If I am going to be traveling I stay away from salads, fruits, etc and I could live off fruits and veggies. When I am flaring the only fruit I can have is canned pears, it may sound gross to some, I get it in the light syrup... at least it's fruit.

Hang in there sis, love ya!Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

Hi Rosie...I thought I would pop in here since I haven't had a chance to make an email yet! But I am too sorry about the diagnosis. You have a challenge ahead of you thats for sure but hopefully it won't give you too much grief considering that you are already going thru so much. I have UC which is similiar to Crohns so if your CD is hanging out in your large intestine and you have any questions, don't hesitate to shoot me an email. My mother had CD too so even though I have UC, I know a bit about CD as well. ((Big hugs from me to you))

Babs . . . you are so sweet! Thanks for the concern. Stacie . . . AKKKK that's awful . . . I don't want to think that I can't eat the raw veggies and fruit. But I'm sure watching to see what is the culprit. I can't believe that so many people live like this and can't get out of the vicious cycle. My gut issues has lasted about a month at a time max. Sometimes just a few days. But I've been heading them off with meds. Your comment about salads rang some bells too. When I was working, I had to come home early from work because of instant stomach problems after eating at a salad bar . . . I thought it was the preservatives . . . never thought about it being the salad. I had to quit eating salad out. I actually didn't even make it to the bathroom sometimes and had to come home and take a bath . . . ewwwwww. Never dreamed it was Crohn's! Just thought it was a stomach bug or sensitivity. Thanks for the tip on pears. I'll have to stock some in my pantry. Do you do ok with bananas. They always seem like a safe food for me. Hi Sherry . . . thanks so much for the offer of info. I'm sure I'll need it. I was actually prepared to learn that I had UC . . . . but I wasn't prepared for the CD . . . I just figured if it was Crohn's it would have showed up in previous c-scope. But that old scope DID show diverticulosis and inflammatory bowel and that darned doc told me to eat more fiber and come back in a few years for another scope. So . . . all along I've been ignoring all this pain, bleeding other issues. The new GI was really mad when I told her what the previous doc said. She thought I misunderstood him until she looked at my insides. She said the worst inflammation is in the ileum and in the large intestine right where the large and small intestine connect . . . which is the most common hang-out for crohn's. I'm waiting on IBD7 test results and she gave a script for Entocort which she is pretty sure she'll have me fill after she sees the IBD7 results. I do have a question about the Entocort . . . if you might know about it. I was feeling pretty safe with it when she said it concentrates in the gut and doesn't give the problems associated with other steroids . . . but what I'm reading online sounds like it really can still cause bone loss, weight gain, high blood pressure and diabetes. My prescript ions is for 9mg/day x 3 months with 4 refills. I hope that doesn't mean this will be a maintenance drug. I wouldn't mind taking it for a couple months and then tapering . . . but I'm scared of taking it for a long time. As luck would have it . . . I'm starting another flare with the pain and frequency . . . she told me to take the medrol dose pack that I have on hand . . . so I'm hoping this flare will disappear. I've made myself some potato soup as Navy suggested and had that for dinner last night and b'fst and lunch today. Mornings seem to be the worst. Thanks again for your kind offer . . . its so nice to know where to get help. Blessings!
In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Psalms 139
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator

AlwaysRosie said... worst inflammation is in the ileum and in the large intestine right where the large and small intestine connect . . . From time to time I have a few days where my stomach isn't quite right....right at that very spot. Usually gas & cramping right at the ileocecal valve...that's the valve that makes sure stuff doesn't go backwards from cecum (large intestine) back into the small intestine... and sometimes either constipation or it's opposite twin. Why couldn't that be inflammation from Lupus or UCTD rather than a whole other animal?? Maybe because you have diverticulitises? Hummm.....
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Lynnwood . . I wondered the same thing. In fact, I was sure it was simply autoimmune issue just like my connective tissue issues. But then, I have never tested + ANA and my docs don't agree on whether I have Lupus or UCTD. Not sure exactly what they look for in the gut biopsies . . . but from the looks of things on the crohn's board, many there are waiting for a dx . . . just like here. Always more questions than answers. But the solution would be the same . . . anti-inflamms for the gut. Now the diverticular disease, I believe, is a separate issue and quite common in the general population. The GI doc says that the crohn's will activate the diverticular disease and visa-versa. Explains a lot. I did mention the disagreement between docs about the connective tissue disease and she said that this "may" be the cause. LOL . . . wouldn't it be funny if I've been in the wrong forum all this time???? How can you tell where your pain is located??? I haven't been able to really zero in on that . . . but, I've had right sided, left sided and center pain, as well as pain higher up on the right . . . very confusing. Interesting info about the valve . . . I know so little about all of that. I'm not sure I'm ready to take on all that . . . but I guess I really should. *sigh* I hope you get yours figured out too Lynn! Blessings!
In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Psalms 139
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator

Rosie, Entocort is the "baby" of steroids and while yes you will have less side effects while on this, it is still a steroid and should not be considered for long term use. It will quickly get things settled in there so maybe that was her plan and once she finds out if it's truly CD then she will offer you more treatment options. Many of the meds used in CD are the same we use in UC - as long as it's in the large intestine that is.

Sherry . . . "baby" ??? Meaning mild??? As in this is a good 'first' med??? This doc is Cleveland Clinic and as little as I know about all of this, I feel like I just need to trust her . . . I just don't want to go into any treatment with blinders on. But "baby" sounds like its a good thing. Thanks SO much for your help. Sorry to all the lupans for highjacking the lupus forum for my crohn's junk. Blessings!
In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Psalms 139
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator